The Fight is on...Imperial College XMRV Study

[dipic]

Bonjour, Dr Wessely!

I'm not certain your paper was published in mala fide. Its just a possibility, not really above 50% likelihood. I hope you feel the same way about my illness not being too terribly much above 50% likely to be psychogenic.

Let me extend to you what we men all necessarily desire, after an evolutionary history so fraught with conflict: the cordial and hearty resistance of a diametric foe not lacking in esprit! My poposition to you today: pathopsychology is barely anywhere near science. There are almost no formally verifiable or falsifiable pathopsychological statements. Pathopsychological theories have continually been informally supplanted by superior physiological theories. Cheers, see ya nect time!

Brilliant.

 

[_Kim_]

Now that's an interesting question, I don't recognise the UNUM reference but I do recal the posting you mention.

I'm not sure why they'd need my e-mail to establish such facts, and clearly an e-mail can be forged. But in principle, if the mail were received during the period within which Simon told me I could publish any of his comments, which has now because I introduced my own circumstances, been retracted, then in principle and following my own ethics I'd feel I was in a very difficult place, but honesty would ultimately come first.

This was the post that contained Wessely's response re: UNUM

 

[spit]

Eric from I&I Hi,
I wish I could tell you, I wish I knew what you were asking, I asked in an earlier mail if it was possible for you or Spit to ask some of your questions directly to guys involved at Imperial, again it wouldn't mean much to me but your take on their answers would sure tell me / us a lot. Any hope? As I answer this I've not gotten as far as where I gave 'full disclosure' of where my account came from, hopefully it won't be a storm but it's why I just recanted and didn't give opinions on what I'd been told, having said that it all sounds reasonable to me.

I missed that, sorry.

For me personally, I'd have to think for a bit about what, specifically, to ask them. Most of my concerns center around the validation of their PCR assay, while they seem to feel that their validation was sufficient -- I'm not really sure how to proceed from there, particularly as I'm going from far less specific knowledge about PCR than they are. That's not to say I don't feel at all confident in my opinion, because the underlying problem I have is with their apparent confidence using any test that they validated using only one positive reference, especially when that positive sample isn't entirely the same as a positive sample from actual human tissue -- the details of PCR are important, and I know just enough to be able to muse a little about potential problems, but the more fundamental problem is a broader one about establishing solid confidence in any new test. I'm not sure how to ask them about that, though, when the response that Cort got earlier seems to be saying, essentially, nope, we feel we validated it just fine, if there had been XMRV we would have found it this way.

I guess what I'm saying is that I don't see a whole lot of room here for the questions I'd like to see answered. They feel they've already dealt with them. I don't. I'm not sure where to go from there, and I certainly don't have a background that would allow me to argue the point easily. Other scientists with more work in molecular biology are probably going to have to take that up with them; I'm just a wee little conservationist type who likes plants and insects the best, and who has just enough background in cell & molecular to hopefully provide some insight and not screw up my details too much. I'd hope they could point out potential flaws in my experiments, too, just as scientists, but I don't doubt they'd have trouble asking the right questions about interactions between argentine ant colonies, if that makes sense.

Anyway, I'll give it some thought. The exchange here is interesting; it was linked back somewhere in this thread, but I wanted to point it out again. It is heartening, honestly, to see that people with more expertise in these areas have some of the same concerns, makes me silently thank some former profs for apparently cramming things into my brain fairly well. But they're probably the ones to watch for more detailed Q & A on the science.

Also, Holmsey, for the record, I appreciate that you're trying to keep a neutral position on the people/political aspects of all of this stuff. I know some others here feel that the history and so forth is so clear that their complete mistrust of anything coming from Wessely et al. is plenty justified, and I respect that, too, but I do understand wanting to consider every possibility before personally writing anybody off.

 

[Holmsey]

That would probably the very last possible reason for getting the study out so quick. Oh, Holmsey, if only you realized where our disdain for the Wessely school came from. :headache:

It doesn't hurt to hear a completely different take now and then though, I guess. It's somewhat endearing, if not naive but forces us to question our predispositions, if only for a second.

[video=youtube;L5foBQ1TzV0]http://www.youtube.com/watch?v=L5foBQ1TzV0[/video]

To the heart of the matter, there's real dislike, even hate for Simon Wessely on these threads, I'm not blind to it and I'm not stupid, hate always has a root. I'm not so different, I don't like bad people, and they're everywhere, thing is my personal test for them. I have to establish for myself that they are motivated by bad intent, that if they do damage, they do so through choice and not simply because they beleive they are doing good. So far I haven't managed to establish what the case is wish SW.

Something to reflect, if you're only knowledge of Psychiatry was from this site you'd want to send the army in to destroy every last one of them. I work for a health care insurer, we have posters all over the building reminding us that there's more than one in ten adults who require mental health care during their lifetime, these guys are needed, the argument is whether or not they're needed here.

 

[Eric Johnson from I&I]

There was a good epidemiological study on stress in MS. It had a good method, almost. People in a registry, who had experienced the death of a child, were examined to see if they had any more MS than the rest of the population. Yes, they did have slightly more.

The thing is, MS causes people tp have lousy cognition. MS ranges from severe (lethal) to being only occasionally symptomatic, and very benign. MS is a little bit heritable. What if the kids of these people, rarely, had a subtle form of undiagnosed MS, and this caused them to die in accidents, such as pedestrian-vs-car accidents? Accidents are a serious cause of death in non-elderly people: 40,000 people die per annum in the US due to car accidents, and this has been so since the 1950s (total of two million deaths).

I would like to look at that study's data to see about the matter of accident deaths. And there are other possible confounds that might mess it up, which would take forever to discuss.

This is pretty much the best and most objective kind of psychopathological study I know of -- and i have reservations about it still. I dont think there many more types of really objective studies that can be done in that field. I havent seen any. When you ask the sick person, after getting sick, what they remember, they are very biased. The typical neurologically ill person is hypersensitive, not only to what is around him, but to his past. And there is a burning drive, part of human nature, to discover the cause of the waylaying illness. (I myself was at one time very vulnerable to this.) Thats why so many people are convinced that they were sickened by X, Y, or Z, when this really cant be proven from a single case, unless they got sick the very instant that X Y or Z occured. Otherwise it is really hard to rule out coincidence. There are over a billion english speakers in the world, and of course there are 6 billion people overall. That provides a lot of opportunity for coincidence.

 

[Holmsey]

Repeat,

Would you be willing, if requested by the editorial board of PNoSone, to forward to them a copy of the email in your possession from Professor Simon Wessely containing an admission that he was a former advisory board member of UNUM? Its a simple question. Since the relationship was not declared before publication of the article, your assistance could result in the complete retraction of the article by PNoSone.

We must be online at the same time, I've answered you first mail a few minutes back and only just reached this one. This is clearly important to you so I've got to ask.

You get the paper retracted, does that change the result, no, does it change the fact everybody knows about it, no. What's the point, are you just out to get Wessely and see his tolerating me as a chance to do that? If it's the case that he should have disclosed it and hasn't then ultimately he'll have to take responsibility for that but I really hope I'm not the one who has to decide, it's not what I'm about.

 

[Holmsey]

Hi Holmsey, thanks for responding. I didn't know his email was public knowledge. What is it?

I'm surprised that he's so accommodating as far as taking questions from the public. And, yeah, we might want to give more thought to who should act as spokesman - though you do have a natural advantage, since you already "know" him.

I'm at home now, I only e-mail him from work, I think that's maybe why he responded, health care company and clearly I wasn't going to rant at him from an employers e-mail address.

Anyway, I can pass it on tomorrow or it's at the begining of the now closed 'Simon Wessely on XMRV' thread.

 

[Dx Revision Watch]

Orla,

Action for M.E. had the press release on their own site on 6 Jan - that's where I picked the PDF up from for my own site.

Charles Shepherd also confirms that he received a press release, himself:

"The first I knew about publication of the Imperial Colege paper was when I was sent it with a press release on the day before it was published."

 

[Eric Johnson from I&I]

> posters all over the building reminding us that there's more than one in ten adults who require mental health care during their lifetime

You believe that? What did your ancestors do when those guys didnt exist? I'm not saying our ancestors never suffered mentally. But there is limited evidence, in my view, that those guys do benefit to such sufferers (also limited evidence for benefit from antidepressants).

Anyway, I'm expert in neither matter; only if I was would I dare to drone on boringly on minutiae of how the evidence is interpreted. Obviously, society has to muddle through the best it can. Insurers have to do their work, and for the most part they provide us with good. If anyone disagrees, he need not do business with em (at least so far -- this may be changing now in the USA I guess -- I never read the newspaper so I dont know whats happeneing.)

Suffering is hard to root out entirely and still have a working society. The particular suffering of that dude in the vid is fortunately rather rare. But it sure makes a point, a heck of a point. All we have to do to be fair as a society is to go forward very objectively with the science we have in hand now. Unfortunately the gore of the social past, be it from war or what have you, is never going to be cleaned up, it only recedes to the horizon.

 

[Eric Johnson from I&I]

In the end, what practical difference does it make if Homesly consorteth with Wessely. It doesnt bother me. Sure, we dont love Wessely. Great. In the end you got to be practical.

 

[Eric Johnson from I&I]

Homes -- maybe you should give up the text to the PLoSmeisters. Supposedly we live in this open society... dudes talk, opposing ideas are exchanged, information flows. Freely. No?

Haha, just joshing ya yo, jabbing you from that direction. Your decision, of course... the "existential choice"! The fate of the world!

Yes, I am drunk. In my defense, I drink seldom.

 

[garcia]

I'm not so different, I don't like bad people, and they're everywhere, thing is my personal test for them. I have to establish for myself that they are motivated by bad intent, that if they do damage, they do so through choice and not simply because they beleive they are doing good. So far I haven't managed to establish what the case is wish SW.

Holmsey I retract my objection to you acting as a go-between given that is what other people are asking you to do (so its not fair of me to object).

As for intent. Intent is irrelevant. What matters is the overwhelming harm that has been caused to the patient population by the Psych lobby.

The serial killer who kills his victims because he wants to cleanse them of their sins has good intent. "Good intent" is no defense against overwhleming harm. Never has been and never will be.

 

[spit]

What did your ancestors do when those guys didnt exist?

Well, in all fairness, they quite possibly drilled holes in people's skulls to let out the evil spirits. No, really. People did that.

I think there are good uses for psychology. I also think it's disturbing that the pitfalls in diagnosis and treatment don't seem to be causes of great concern to many psychologists I've come across. Everybody seems quite concerned about misdiagnosing a physical disease, but I've known quite a few cases of psychological misdiagnosis, and nobody seems that bothered by them, even where the drugs involved were at least as dangerous and unpleasant as treatment for the later-diagnosed diseases. It's weird, frankly.

 

[Eric Johnson from I&I]

The Wess-meister is just waiting for the dam of the transiently-painful epiphany to burst. Cause he can tell we are all just sensible good old boys. Good spiritied, free spirited deep down -- or really only a little ways down -- behind the superficial, physiogenic, but above all superficial neurosis. Isnt that so, Wess. I for one, am willing to hang out with you and reveal to you my complete persona, my psyche. Wenn du willst mein Herr, wen du willst. I hope you like it. I am sometimes not so sure whether I like it or not. But it is what it is. Pretty or no, I am confident that it is not psychopathologic. In fact, its is utterly normal, and as it happens normal is neither pretty nor ugly. We are organisms, more than we imagine we are -- and organisms are one thing: resilient against (almost) all that is within them, and much that cometh from without. Those who declared the "total depravity" of man certainly exaggerated. But they didnt exactly lie. De la Rouchefoucauld put it more accurately, with greater sobriety (whatever the religious ever was, it was not sobriety -- for better and for worse). But psyche? She is as resiliant as any animal. Only the physis has heard of pathos. Mutation and the immune system account for the great bulk of pathos.

Here in Western civilization we are "Faustian". We "clear things up" and "get things out of the way" -- no? We are pretty frank.

 

[Katie]

Well, in all fairness, they quite possibly drilled holes in people's skulls to let out the evil spirits. No, really. People did that.

I think there are good uses for psychology. I also think it's disturbing that the pitfalls in diagnosis and treatment don't seem to be causes of great concern to many psychologists I've come across. Everybody seems quite concerned about misdiagnosing a physical disease, but I've known quite a few cases of psychological misdiagnosis, and nobody seems that bothered by them, even where the drugs involved were at least as dangerous and unpleasant as treatment for the later-diagnosed diseases. It's weird, frankly.

Yep, it's called trepanning. In some ancient skulls which can be subject to this trepanning the bone had started to grow back showing the patient survived the procedure, funny the things you remember from school. Then again, I wasn't there for much of my highschool years so at least I was learning when I could! Trepanning is still used to relieve pressure from a brain bleed in emergencies. Doesn't help ME though.

 

[Dx Revision Watch]

Levi,

It is documented that Prof Michael Sharpe has worked for UNUM. Prof Sharpe has declared receiving payments for clinical assessments and reports undertaken for UNUM in his COI declaration for the APA's "Somatic Distress Disorders" Work Group.

It is documented that Prof Peter Denton White does/has done consultation work for the Department of Work and Pensions and for Swiss RE Re-insurance Company. Prof White declares this in his COI declaration for membership of the Medical Research Council (MRC) CFS/ME Expert panel.

But this is not the first time that Prof Wessely has set out his past/current relationship with UNUM and/or Prisma.

I'm confused as to the source of the evidence on which the alleged complaint to PLoS ONE to which you have referred has been made and who has lodged a complaint - or has no complaint been made, to your knowledge?

Can you clarify, please?

Edit: Posts have crossed.

 

[Katie]

Hi guys, I've searched through this thread again to try and find where someone had an image which showed 'SW' provided the cohort. I thought it was Kim but I was wrong, can anyone help me out?

 

[fresh_eyes]

@ Katie: At the bottom of the paper, http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519 , under "Author Contributions"

Responsible for providing samples and associated data from a well characterised and valuable cohort of subjects: SW

 

[Katie]

@ Katie: At the bottom of the paper, http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519 , under "Author Contributions"

Ugh, I scanned the study and missed it, thank you for being my eyes and brain tonight

 

[Hope123]

I haven't been through all the posts but wanted to comment:

1. Concerns about WPI results contaminated by mice: Aside from the phylogenetic evidence discussed in post #121 showing differences between mice XMRV and what WPI found, my thought is that if contamination was an issue, the same percentage would be found in the healthy controls used in that study. That is, if the same process and same labs are used to process CFS samples and healthy controls, an external uncontrolled factor like contamination by mouse viruses will be essentially random and would affect each group more or less equally, not the discrepancy of 3-4% vs. 60-odd%.

(This is the basis for randomization in clinical trials - to control for factors not known or not able to be controlled by the researchers. Most times, these factors come out similar in healthy vs. diseased groups being studied. If not, the randomization was not performed correctly.)

2. Some people have asked about the 3-day difference between when the article was received and when it was published. The journal used is peer-reviewed and legitimate. The numbers of day between reception and publishing depends on the urgency of the matter, how fast the usually volunteer reviwers work, and if there are MAJOR flaws in the study. This doesn't mean the study is perfect (none ever is) but that it is adequate to be published. The critiquing happens later, partly through letters written to the journal. All journals have a letters section where interesting critiques of prior articles get published.

Three days is fast but I suspect online journals work faster than print because of the whole point of an online journal is to get word out quickly; also, reviewers can quickly send in comments over the Internet. The editor of the journal (UCSF prof.) does not review every article but tries to find articles that are signficant, of interest to the journal's readers, and finds experienced reviewers to critique the article before publication.